Welcome to the
Techno-Eugenics Email Newsletter
Number 11
September 19, 2000
Supporting genetic science in the public interest
Opposing the new techno-eugenics
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This is Issue Number 11 of the Techno-Eugenics Email Newsletter,
as far as we know the only on-line newsletter focused on the
politics of the new human genetic and reproductive technologies.
If you're receiving this newsletter for the first time, please
see the instructions for subscribing and submitting items
at the
end of this message.
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"Perhaps [the] most compelling [reason to clone
a human]
is cloning a dying child if this is what the grieving
parents want. But this should not be permitted. Not only
does this encourage the parents to produce one child in
the image of another, it also encourages all of us to
view children as interchangeable commodities. The death
of a child thus need no longer be a singular human
tragedy, but rather an opportunity to try to duplicate
the no longer priceless deceased child."
-- George Annas, Some Choice: Law, Medicine, and the
Market
(New York: Oxford University Press, 1998, pages 12-13)
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CONTENTS
I. AAAS RELEASES REPORT ON HUMAN GERMLINE ENGINEERING
II. NEWS AND POINTERS
1. New Policies on Human Embryo Research in the US and
UK
2. European Parliament Opposes UK Move on Embryo Cloning
3. British Medical Experts Predict Human Cloning Despite
Strong Public Opposition
4. Supporters of Human Cloning Press Ahead
5. "Disability Rights Critique of Prenatal Genetic
Testing"
III. UPCOMING EVENTS
1. Gene Media Forum, New York City, September 20
2. California Cloning Committee, Los Angeles, September
22
IV. ABOUT THE TECHNO-EUGENICS EMAIL NEWSLETTER
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I. AAAS RELEASES REPORT ON HUMAN GERMLINE ENGINEERING
The American Association for the Advancement of Science has
released a
long-anticipated report concerning human germline modification.
It is
available at <http://www.aaas.org/spp/dspp/sfrl/germline/main.htm>.
The 20-person committee that prepared the report was dominated
by
people supportive of human germline engineering. A superficial
reading
can give the impression that the report makes a case *against*
germline
modification--and this is what media headlines about it have said
(See
<http://www.washingtonpost.com/wp-srv/aponline/20000919/ aponline004247_
000.htm>; Los Angeles Times, 9/19/00, p. A6; and San Jose Mercury
News,
9/19/00, p. 13A.)
Indeed, the initial sections of the report (see "Findings"
and
"Concerns" below) do present many of the reasons that
human germline
engineering is extraordinarily dangerous and ultimately unjustifiable.
However, a careful reading of the report shows that the expressed
concerns over safety, justice, and societal impacts are, in the
end,
used to legitimize final recommendations of just the sort favored
by
*proponents* of germline modification: creation of a "system
of over-
sight" that would promote "a national conversation"
on human germline
modification "for therapeutic and enhancement applications,
and under
what conditions human research and application could proceed."
The report actually presents a list of topics that guidelines
for
human germline modification should address, including "Selecting
subjects to participate" in research, "Developing an
appropriate
consent process," and "Identifying the parameters of
appropriate
public-private partnerships."
Nowhere in the report is the option of banning human germline
modifi-
cation even considered. Nowhere are the bans that already exist
in
numerous countries even mentioned.
By acknowledging the real dangers of germline engineering,
the report
conveys to readers that the authors are responsible and worthy
of
trust. Then, by ignoring the option of a ban, and by considering
instead a detailed set of procedural guidelines for regulating
germ-
line engineering in the event it were approved, the report subtly
works
to de-legitimize the intuitive rejection of germline engineering
that
most people share.
Over the past decade advocates of germline engineering have
worked to
establish themselves as the authoritative voices on this topic,
and are
now in a position to dominate the "national conversation"
for which they
call. It is critical that people who are opposed to human germline
engineering and a techno-eugenic, post-human future prepare to
engage
this immensely consequential issue in the public arena.
A detailed critique of the AAAS report is in preparation. Information
on
how you can obtain a copy will be included in the next newsletter.
Verbatim excerpts from the report's Executive Summary follow:
[Begin verbatim exerpt]
Human Inheritable Genetic Modifications: Assessing Scientific,
Ethical, Religious and Policy Issues
Prepared by the American Association for the
Advancement of Science, September 2000
FINDINGS
o The working group concluded that IGM [inheritable genetic
modifica-
tion] cannot presently be carried out safely and responsibly on
humans.
o The working group identified few scenarios where there was
no
alternative to IGM for couples to minimize the prospects that
their
offspring will have a specific genetic disorder.
o Guided by the theologians - mainline Protestant, Catholic
and
Jewish traditions - and ethicists on the working group, the group
concluded that religious and ethical evaluations of IGM will depend
on the nature of the technology, its impact on human nature, the
level
of safety and efficacy, and whether IGM is used for therapeutic
or
enhancement purposes.
o To date, the private sector has played a prominent role
in the
funding of somatic genetic research, raising questions about the
influence of commercial interests on the conduct of researchers
and
on the scope and direction of the research. Similar questions
are
likely to surface if IGM research and applications go forward.
CONCERNS
o IGM might change attitudes toward the human person, the
nature of
human reproduction, and parent-child relationships. IGM could
exacerbate
prejudice against persons with disabilities. The introduction
of IGM in
a society with differential access to health care would pose significant
justice issues and could introduce new, or magnify existing,
inequalities.
o IGM for enhancement purposes is particularly problematic.
Enhancement
applications designed to produce improvements in human form or
function
could widen the gap between the "haves" and the "have
nots" to an
unprecedented extent. Efforts to improve the inherited genome
of persons
might commodify human reproduction and foster attempt to have
"perfect"
children by "correcting" their genomes. Some types of
enhancement
applications might lead to the imposition of harmful conceptions
of
normality. The dilemma is that IGM techniques developed for therapeutic
purposes are likely to be suitable for enhancement applications
as well.
Thus, going forward with IGM to treat disease or disability will
make
it difficult avoid use of such interventions for enhancement purposes
even when this use is considered ethically unacceptable.
RECOMMENDATIONS
o Even in advance of a decision about whether to proceed with
IGM, a
public body should be assigned responsibility to monitor and oversee
research and developments in IGM.
o It is important to promote extensive public education and
discussion
to ascertain societal attitudes about proceeding with IGM and
to develop
a meaningful process for making decisions about the future of
this
technology.
o If a societal decision is made to proceed with IGM, a comprehensive
oversight mechanism should be put in place with authority to regulate
IGM applications in both the public and private sectors.
o Before IGM can proceed, there must be a means in place for
assessing
the short- and long-term risks and benefits of such interventions.
Society must decide how much evidence of safety, efficacy, and
moral
acceptance will be required before allowing human clinical trials
or
IGM applications.
o Human trials of inheritable genetic changes should not be
initiated
until techniques are developed that meet agreed upon standards
for safety
and efficacy. [A long paragraph specifying those standards follows.
This
section concludes...] If it is shown at the full genome sequence
level
that the sequence of a functionally normal genome has been restored,
there will likely to no need for multi-generation evaluation.
o The role of market forces in shaping the future of IGM research
and applications should be carefully assessed to ensure that adequate
attention is paid to public priorities and sensibilities.
o Existing conflict of interest guidelines governing research
should
be reviewed and, where appropriate, amended and vigorously enforced.
The
guidelines should specify when a financial interest in a commercial
IGM
venture is grounds for precluding an investigator's direct participation
in a clinical trial supported by that company.
[End verbatim exerpt]
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II. NEWS AND POINTERS
1. New Policies on Human Embryo Research in the US and UK
In August, proposals to revise government policies on human
embryo
research were announced in both the US and the UK. The two widely
reported developments sparked controversy and renewed speculation
about cloning human children.
In the US, President Clinton announced that American scientists
will
now be able to conduct federally funded research into human embryonic
stem cells if they use cells derived from "surplus"
IVF embryos. The
new policy does not allow scientists who receive government funds
to
create human embryos for research purposes. Congressional hearings
on
human embryo research will be held this fall.
In Britain, a government advisory committee headed by Chief
Medical
Officer Liam Donaldson called for allowing scientists to create
human
embryos by cloning in order to obtain embryonic stem cells. The
cloned
embryos could be kept for no more than 14 days. Prime Minister
Tony
Blair announced that parliament will vote on the recommendation.
Though media coverage focused on opposition to the destruction
of
embryos by the Pope and anti-abortion groups, pro-choice organizations
also condemned the British recommendations. A statement by the
Campaign
Against Human Genetic Engineering said, "Until there is a
global ban on
reproductive cloning there should be a moratorium on creating
embryos
by cloning....The government must actively lobby for an enforceable
international treaty banning reproductive cloning."
See <http://www.users.globalnet.co.uk/~cahge>.
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2. European Parliament Opposes UK Move on Embryo Cloning
On September 7, the European Parliament approved by a 7-vote
margin a
resolution attacking the British proposal to allow embryo cloning.
The
resolution, written by an unusual coalition of Greens and center-right
groups, has important political and moral value but no legislative
effect.
Framed outside the debate over abortion rights, it asks the governments
of the European Union "to introduce binding norms that prohibit
all forms
of research on any type of human cloning in their territory, and
provide
penal sanctions for any violation." See <http://www.europarl.eu.int>
and
<http://www.ewtn.com/vnews/getstory.asp?number=6771>.
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3. British Medical Experts Predict Human Cloning Despite Strong
Public
Opposition
A survey of 32 British scientists and doctors conducted in
August by
The Independent newspaper found that more than half predict attempts
to clone a human being within 20 years "if the technical
and safety
issues could be overcome." One fertility doctor said, "The
equipment
needed for cloning is simple and cheap, and, whether it is approved
of or not, it will happen. It is unstoppable."
Many respondents "emphasised that although they believe
[human cloning]
would happen, they personally hoped that it would not." Some
experts
believe, in the words of Edinburgh scientist Austin Smith, that
it will
not be "possible to address the technical and safety issues
involved." See
<http://www.independent.co.uk/news/UK/Science/2000-08/cloning300800.shtml>.
Polls continue to show vehement public opposition to human
cloning in
the UK and the US. An August study in the US found an overwhelming
78
percent of respondents against the cloning of human beings. Sixty-four
percent opposed embryo cloning. See <http://www.worldnetdaily.com/
bluesky_dougherty/20000825_xnjdo_most_disap.sht>.
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4. Supporters of Human Cloning Press Ahead
Italy is one of the numerous countries that has banned human
cloning.
But Italian infertility expert Dr. Severino Antinori, whom the
Boston
Globe has called "perhaps the best-credentialed cloning enthusiast,"
said in an August interview that he wants to offer cloning to
men who
have no sperm. (Richard Saltus, "Are we getting closer to
cloning
humans?" Boston Globe, 9/5/00, <http://www.boston.com/dailyglobe2/
249/science/Are_we_getting_closer_to_cloning_humans_+.shtml>.)
In another media interview, Antinori said that support for
reproductive
cloning is growing among fertility experts. "Now, it's not
taboo to use
cloning in some cases--not like two years ago," he said.
Antinori noted
that when international fertility experts meet in September, cloning
as
a fertility treatment will be on the agenda for the first time.
(Emma
Ross, "Human cloning: Misguided hype or imminent certainty?,"
August 12,
2000, <http://www.foxnews.com/world/0812/i_ap_0812_39.sml>.)
Clonaid, the company formed by the UFO-oriented religious group
called
the Raelians, said in an August 23 press release that it was ready
to
clone a 10 month-old child who had died because of medical malpractice,
and whose parents were willing to pay the cost of the attempt.
Clonaid
also announced that it would "present" the women whom
it had chosen as
surrogate mothers at a September 21 press conference in Montreal.
"I don't think it should cost more than $500,000,"
Clonaid scientific
director Brigitte Boisselier told the Boston Globe. Boisselier
said
that Clonaid has four scientists on its team, and "a list
of about 100
people wanting to be cloned," but is still seeking an existing
lab, or
a place to build one, in a country where cloning is not outlawed.
See
the Ross and Saltus articles listed above and <http://www.clonaid.com>.
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5. "Disability Rights Critique of Prenatal Genetic Testing"
A 22-page report titled "The Disability Rights Critique
of Prenatal
Genetic Testing: Reflections and Recommendations," has been
published
by the Hastings Center. The report, authored by Adrienne Asch
and Erik
Parens, is based on a project that involved two years of meetings
and
dialogue among disability rights activists, bioethicists, medical
geneticists, genetic counselors, physicians, and lawyers. The
project
was funded by the Ethical, Legal, and Social Implications (ELSI)
section
of the National Institute for Human Genome Research. For copies,
contact
the Hastings Center at 914-424-4040 (phone), 914-424-4545 (fax),
or
<mail@thehastingscenter.org>,
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III. UPCOMING EVENTS
1. Gene Media Forum, New York City, September 20
In conjunction with the exhibit "Paradise Now: Picturing
the Genetic
Revolution," at the Exit Art gallery in New York City through
October
28), Gene Media Forum presents a public program titled "What
Can We
Expect?" The panel discussion will be held Wednesday, September
20,
7 to 9 pm at the Graduate Center, Harold M. Proshansky Auditorium,
City University of New York, 365 Fifth Ave. at 34th St., Manhattan.
Admission is free but reservations are required. Call 212-826-1531
for
tickets, or contact Erica Cerilli at 212-826-0256 or <eacerill@syr.edu>.
The panel will be moderated by Paul Billings of GeneSage and
the Council
for Responsible Genetics. Confirmed panelists include Taylor Crouch,
Variagenics; Cornelia Dean, The New York Time; Stephen Fodor,
Affymetrix,
Inc.; Steven Hyman, National Institute of Mental Health; Eric
Lander,
Whitehead Institute/MIT Center for Genome Research; Dorothy Nelkin,
New
York University; Peter Neufeld, The Innocence Project; Dale Pfost,
Orchid
BioSciences, Inc.; Harold Varmus, Memorial Sloan-Kettering Cancer
Center;
and J. Craig Venter, Celera Genomics.
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2. California Cloning Committee, Los Angeles, September 22
The California State Legislature Advisory Committee on Human
Cloning
will meet on September 22 to discuss the "therapeutic applications
of
cloning." Presenters include Lawrence Goldstein, UC San Diego,
on
"Stem Cell Technology and Cloning," and Glenn McGee,
University of
Pennsylvania on "Ethical and Legal Issues for Non-reproductive
Cloning."
McGee is the author of "The Perfect Baby" (NY: Rowman
& Littlefield,
1997), whose concluding chapter is titled "The Not-so-Deadly
Sins of
Genetic Enhancement."
The meeting will be held at the Junipero Serra Building, 324
West 4th
Street, Carmel Room, Los Angeles, at 9 am. A public comment period
is
scheduled for 2:30 and a "closed meeting of the committee"
at 3:30.
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IV. ABOUT THE TECHNO-EUGENICS EMAIL NEWSLETTER
This newsletter stems from the work of academics, activists,
and others
in the San Francisco Bay Area who are concerned about the direction
of
the new human genetic technologies.
We support technologies that serve the public interest. We
oppose
those--including human germline engineering and human cloning--that
foster
inequality, discrimination, objectification, and the commodification
of
human genes and tissues.
This newsletter is intended to alert and inform concerned individuals
about the new technologies and the techno-eugenic vision. For
at least
the next several months, the newsletter will be irregular (once
every
four to six weeks) and informal. We'd welcome feedback, and suggestions
about focus and format. A web site will be coming soon.
Marcy Darnovsky will moderate. Send submissions to her via
the email
address below.
Unless we hear from you, we'll keep you on this list. Please
let us
know if you don't want to receive the newsletter---we won't feel
rejected! On the other hand, feel free to forward it to others
who
may be interested, and encourage them to subscribe by reply to
Marcy.
If you're a new subscriber, let us know if you'd like to receive
back issues.
Marcy Darnovsky, Ph.D. Richard Hayes, M.A.
teel@adax.com rhayes@publicmediacenter.org